This Topic is one of the most important to me. I truly believe and hope that every parent who has a child with special needs can benefit in some way from what I have to say. For many years after Ethan’s autism diagnosis, I suffered from a loss that I couldn’t quite understand. I certainly did not want to admit it to anyone, especially myself. However, the feeling was always there, and it brought a sense of sadness to my soul.
It came from knowing that I might never be able to do typical things. In a typical way with my child. This is unfortunately not only felt by me but also by his father and our entire family as a whole in one way or another. It ranges from very small things to very large things and will probably vary with you depending on the severity of your child’s disability.
I’ve Never Heard Him Call Me Mommy
For us, the small things could be anything from my husband not being able to throw a ball around in a typical fashion. Or teaching him how to play a traditional game of basketball. For me, not being able to cook with my child or have a conversation over a meal together. See my post on Autism And Eating: My Success Story. To bigger things like never having heard him call me mommy and the possibility that I never will.
This is one of the main reasons why being a parent to a child with special needs can oftentimes feel so lonely. I especially feel this when I’m in the park with my son. Watching all the neurotypical kids making friends so easily and their parents talking to one another and having that comradery.
The Loss Can Be Overwhelming
Unfortunately, for us, if children do try to talk to Ethan, they very quickly learn that the conversation or engagement is not being reciprocated and walk away. Or they realize right off the bat that he’s not quite like them and avoid him at all costs. Unfortunately, not many people want to talk to the “weird kid” or the “weird kid’s” parent for that matter. It feels extremely isolating and often makes me feel resentful. Not at my son or even the kids and parents but the unfairness of the situation. It’s very difficult to not feel like you drew the short straw.
A big loss for me is that my son does not speak. Although he is non-verbal, however, he is extremely vocal. Whenever we are walking down the street or especially when we are at the park where he’s enjoying himself, he vocalizes, LOUDLY. People always stare and I have to be honest and admit that for a long time this embarrassed me. I’m not proud of that but it’s true. It took me a long time to become comfortable with it and then walk with my head held up proudly at the way my son chooses to express himself.
It Took Me A Long Time To Be Ok With All Of It
It took me a long time to be ok with all of it. I used to feel ashamed of myself for feeling this way. How could any part of me be embarrassed by my own child or be hurt by what he can’t do? I had to understand that not only is it ok but it’s perfectly normal to feel this way. I had to give myself permission to mourn the loss of what could have been. More importantly, though, I had to understand that giving myself that permission didn’t mean that I loved or wanted my son any less. The way that I felt had absolutely no reflection on who my son was or how wonderfully perfect he is.
It’s not just that we live in a society that instills in us that anything less than perfect or different is unacceptable. It’s that we want for ourselves to be able to fit in and be a part of that “normal.” Not only is it ok to feel the loss but I think it’s beneficial and healthy. You have to allow yourself to feel it in order to accept the loss and release those feelings.
I Don’t Live In Those Feelings Anymore
Now I’m not going to pretend that just because I allowed myself to go through this process, I never feel the “why me?” Or feel resentful and hurt about it because there are still times I do. Honestly, I don’t think that it will ever really truly go away. I just don’t live there anymore. I don’t live in those feelings anymore. More importantly, though, I don’t feel like a monster or live with the guilt of feeling it.
My son, despite his challenges, is wonderful and kind and 100% perfect. Feeling that loss could never mean that I do not want my son exactly the way he is. He has made me a better human being and has given me so much more than he will ever know. Nothing in this world can ever change that. I found the release in acceptance. I hope the same for all of you that may, in some way or another, relate to how I feel.
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